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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation® Canada
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Patient-Reported Treatment Outcomes in ME/CFS and Long COVID

We are pleased to share a new preprint by Wenzhong Xiao, PhD & Martha Eckey, PharmD: “Patient-Reported Treatment Outcomes in ME/CFS and Long COVID.”

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The Heart of the Matter

  • Patient-Reported Treatment Outcomes in ME/CFS and Long COVID: A preprint was just released, including analysis of over 150 treatments and their perceived effect on symptoms, as reported through the TREATME survey by over 3,900 patients with ME/CFS and Long COVID.
  • The patient demographics, symptom profiles, and, importantly, treatment responses were strikingly similar between people with ME/CFS and Long COVID.
  • The team identified a number of treatments that had the most positive perceived impact, including which symptoms they most frequently affected.
  • They also identified patient subgroups based on symptom profiles and comorbidities that responded to treatments differently.
  • Collectively, the data from this study provides invaluable insight into the patient experience and may ultimately help guide future research leading to precision medicine approaches to clinical management of ME/CFS and Long COVID.

Patient-Reported Treatment Outcomes in ME/CFS and Long COVID

In collaboration with patient-scientist, Martha Eckey, PharmD, Wenzhong Xiao, PhD, Director of OMF’s Computational Research Center for Complex Chronic Diseases, and his team have released a preprint of their project analyzing patient-reported treatment outcomes in ME/CFS and Long COVID. The goal of the project was to collect lived experience information about treatments used for ME/CFS and Long COVID, including how effective the treatments have been and which symptoms were most affected by each treatment. These data may ultimately yield new avenues for future research and precision medicine approaches to the clinical management of ME/CFS and Long COVID.

In this study, over 3,900 patient responses to the TREATME survey—created by Dr. Eckey—were collected and analyzed, covering more than 150 treatments in addition to patient demographics, symptoms, and comorbidities. An initial observation from these data supports the findings of other research identifying the similarities between ME/CFS and Long COVID: the patient demographics and symptom profiles of participants with ME/CFS and Long COVID were highly aligned. Through this study, the team was able to extend those similarities further, as the two patient groups showed similar responses to treatments.

Through computational analysis of all the data (patient-reported information), the team identified the treatments that have been most effective for patients. The treatments evaluated include various supplements, medications, and non-drug approaches. Some of the treatments that showed the most significantly positive responses, based on patients’ perceived health impact, were pacing, fluids/electrolytes, intravenous/subcutaneous immunoglobulin, low-dose naltrexone, manual lymphatic drainage, and others. The survey also collected information on which symptoms each treatment seemed to affect the most.

On top of analyzing overall treatment responses, the study team identified patient subgroups with specific symptom profiles and comorbidities that responded differently to different treatments. For example, a subgroup of patients whose most prominent symptom was POTS showed more positive response to autonomic modulators than other subgroups. These results highlight the importance of precision medicine and developing personalized treatment plans based on symptom presentation.

Ultimately, the data collected through the TREATME survey provide invaluable insights into the patient experience. Without approved treatments for ME/CFS and Long COVID, these insights can help guide future research directions that may result in improved clinical management of these conditions, tailored to each person.

Read the full preprint below.

Read Now

OMF Canada provides this paper as a resource for informational purposes only. The results presented herein are based on patient-reported information and should not be construed as medical advice. OMF Canada takes no responsibility for the data presented. Patients are strongly advised to consult with their healthcare providers before making any decisions regarding new treatments or changes to their current medical regimen. Always seek the guidance of a qualified medical professional with any questions you may have regarding a medical condition.

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